Advance Directives, Statements and Agreements and Crisis Cards

Author Mike Took - Nov 2002 - Rethink Policy Statement 51

Rethink supports people with a severe mental illness being able to express their wishes in advance directives, statements and agreements and crisis cards when they are well. They should be taken fully into account when they become unwell.

Policy Development

Wishes expressed by an individual when well must be fully taken into account at times when they are incapable of expressing their wishes, even when they are subject to compulsory powers under mental health legislation. The legal status of advance directives and statements and how they should be drawn up should be clarified in a legal Code of Practice under Mental Incapacity legislation.

Mental health staff should encourage and help people with a severe mental illness make advance directives and statements which:

• Nominate a person whom they know well who is willing to act on their behalf
• Specify their particular wishes, including those about social care and how and where they should be treated, with reasons, if they want to.
• Advance directives, statements and agreements and crisis cards should be dated and limited by time for five years. People with a severe mental illness should have the right to change them, including any nomination of a person to act on their behalf.

Action

Rethink is supporting the recommendations on advance directives made in the Law Commission Report and proposals in the reform of the Mental Health Act for a nominated person to be specified in advance agreements. Rethink has received funding to research the literature on advance directives and to provide examples to test in 2003.

Questions and Answers

Q Why are advance directives, statements and agreements important to people with a severe mental illness?

A People with a severe mental illness would be given confidence that should they become unwell, their wishes would be taken into account in decisions relating to their treatment and care.

Q How should the wishes of people with a severe mental illness expressed in advance directives, statements and agreements be safeguarded?

A Preferably, powers related to advance directives should be introduced in Mental Incapacity legislation. A Code of Practice under this legislation must set out how they should be drawn up and the extent to which wishes expressed in an advance directive, statement or agreement would be taken into account should an individual become unwell.

Q What are the differences between advance directives, statements and agreements and crisis cards?

A They are:

• advance directives are legally binding but are limited to issues related to medical treatment
• advance statements are not legally binding but may be used to express a range of wishes
• advance agreements are legally binding, but may be compromised in their formulation to achieve an agreement
• crisis cards enable people concerned with the individual to know how to act in accordance with their wishes.

Q What are the rights of informal carers in relation to a nominated person specified in an advance directive?

A According to the Draft Mental Health Bill (2002), a nominated person, if consulted about treatment, will inform the person consulting him or her about the wishes and feelings of the individual about that medical treatment. An informal carer may be specified by the individual in an advance statement or be appointed as a nominated person if such a person has not been specified in an advance statement. If, however, the informal carer is not appointed as a nominated person, he or she has the right to be consulted when an individual is subject to a preliminary examination, subject to the wishes of the individual. In response, to the draft Bill Rethink has responded to say that informal carers will be marginalised as a result.

Advance Directives - Background

1 Advance directives are legally-binding documents which enable mentally competent people to make decisions when well about their medical treatment for a time when they may become mentally incompetent to make such decisions. They are sometimes known as living wills.

2 Advance statements are not legally-binding; they set out what arrangements a person would like made and whom they wish to act on their behalf should they become unwell.

3 Advance agreements are what has been agreed with someone else, eg a doctor.

4 Crisis cards are used to facilitate access to an advocate and record a person's preferences for care and treatment in an emergency. They are designed to be carried around by the owner and have the potential to record a range of useful information. A joint crisis plan is a crisis plan agreed with staff.

5 The Law Commission report, Mental Incapacity (1995) considered advance refusals of treatment and recommended that:

• They may be made by a mentally competent person aged 18 or over
• Treatment should not be authorised if there has been an advance refusal of that treatment but an advance refusal does not apply where those having care of the person consider that refusal endangers that person's life or their foetus, if the person is a pregnant woman
• It should be presumed that they are valid if in writing, signed and witnessed
• They may be withdrawn or modified by the person at any time
• An advance refusal should not preclude the provision of basic care, eg bodily cleanliness, to alleviate severe pain or action to prevent the person's death or a serious deterioration in their condition pending a decision by the court on the validity of an advance refusal.

6 People who are mentally competent may appoint an enduring power of attorney to take decisions on their behalf related to their finance and affairs. The Court of Protection may appoint a person to act on behalf of a mentally incompetent person. The Law Commission report recommended extending the powers of a power of attorney and of a person appointed by the Court of Protection to a person's welfare and health care.

7 In response to consultation on the Law Commission recommendations, the Government proposed in Making Decisions (1999) that, given division of opinion, it was not appropriate to legislate on advance directives. It considered that guidance contained in case law, together with the Code of Practice, Advance Statements about Medical Treatment published by the British Medical Association, provided sufficient clarity and flexibility to enable the validity and applicability of advance statements to be decided on a case by case basis. The Government supported the extending the powers of an attorney and of a person appointed by the Court of Protection to a person's welfare and health care.

8 Section 63 of the Mental Health Act, 1983 gives power to treat people detained in hospital without their consent but this does not preclude an individual exercising choice of the treatment they are given.

9 The Expert Committee report, Review of the Mental Health Act 1983 (1999), recommended that the new Mental Health Act should make provision for the identification of a nominated person with rights and responsibilities, including being consulted during compulsory assessment and prior to discharge from hospital. Care teams will be required to encourage life or their foetus, if the people experiencing mental illness to identify a nominated person as soon as possible. If they remain unable to do so, the Tribunal would appoint a nominated person instead.

10 The White Paper, Reforming the Mental Health Act (2000), confirmed the introduction of a nominated person to represent a person experiencing mental illness in discussions with the clinical team. Clinical teams will be expected to help individuals develop advance agreements, which would be taken into account when they are subject to assessment and initial treatment under compulsory powers. The Draft Mental Health Bill (2002) provides for a nominated person selected by an individual to be appointed but is silent about clinical teams helping such people develop advance agreements.

11 The Government has acknowledged that advance agreements specifying what sort of treatment a person experiencing mental illness would prefer should their mental health deteriorate may be an important factor in determining what care and treatment is in a patient's best interests. Clinical teams would be expected to help individuals develop such agreements.

12 In 1989 Survivors Speak Out and the International Self-Advocacy Alliance developed the first crisis card in the UK. Maudsley Hospital researchers, Dr Kim Sutherby and Dr George Szmukler carried out a pilot study of mental health crisis cards (1997), which found that of 106 people:

• 42 (40%) wished to develop a crisis card or joint crisis plan
• of those, at 6-12 months, 22 still carried their card with them most days or every day
• for 19 (73%) of those who had experienced a crisis, the card was consulted
• in 19 of those cases, the use of the crisis card was considered helpful by the person and/or their key-worker
• of 16 admitted to hospital, a crisis card was used in 13 cases (81%)
• over 50% of people with mental health problems in the study felt more positive about their situation and more in control of their mental health problem
• 15 (41%) of those using crisis cards after 6-12 months felt more likely to continue with their treatment and care.

13 The NICE guidance on atypical antipsychotic drugs treatment for schizophrenia (2002) has recommended that advance directives regarding the choice of treatment should be developed and kept with an individual's care programme.

14 When someone attends a mental health project, staff need information to decide how best to help them should they become ill. They would need to know:

• Who to contact in an emergency
• Who else needs to be told
• What concerns they would have, eg regarding the care of a child or a pet.